End-of-Life Care Perceptions and Preparations of Older LGBT Adults

While there have been several studies on end-of-life care for the general population, there are almost none that focus specifically on LGBT people’s perceptions and needs (Murphy, 2014, p. S10). The LGBT population has a higher incidence of comorbidities and generally die younger than the general population, due to a variety of factors (Harding et al, 2012, p. 602). Combined with emotional support systems that commonly fall outside policy parameters, including non-traditional family structures, LGBT individuals have unique needs at the end of their lives that are currently not being met (de Vries and Gutman, 2016, p. 47). This qualitative, grounded theory method study aimed to identify what specific needs older LGBT people have at the end of life and explore how they plan for care-related needs at the end of life. The following three research questions were the basis for the interviews: 1. What are LGBT older adults’ perceptions of end of life care?2. Do older LGBT adults think/plan for their end of life care? 3. What are the unique barriers/challenges to having a “good end of life care experience”?

Recruitment for the study was via snowball sampling with the assistance of community partners. In total, 17 semi-structured interviews were conducted, transcribed, coded, and analyzed by the Researchers.

Results: Interviewees used ideas about what they did want (positive) and what they didn’t want (negative) about their end of life to set goals and express desires. Positive desires were respect for family of choice and respect for one’s “true self.” Negative desires included not wanting to be a burden and a distrust of institutions. Once people had discovered their basic goals, the researchers discovered four common factors that most people used to get to those goals. Most people referenced family members’ or friends’ EOL experiences and extrapolated from there. Practical considerations were prominent, and spiritual beliefs informed many of the aspects of end of life care that people expected to have. At the same time, every person reflected on the uncertainty of life; not only what physical state they would be in, but the state of society, health care technology, etc. Interviewees bounced back and forth between uncertainty and the factors for decision making to adjust what would be acceptable regarding their end of life care.Limitations on the study include a lack of diversity in sample; interviewees were all white, most had graduate degree (higher socio economic status). The researchers used snowball sampling, which found highly connected/engaged members of a community. The study was also geographically bound to one major metropolitan area in the mid-west.